My fatigue is really bad at the moment. I’m almost weepy I’m so exhausted. I’m seeing my neuro soon and I want to talk about drug therapy but I wanted to ask your experiences first.
Jane
Hi Jane,I really feel for you as the F word is crushing.I know nowt about the M+A,but at present Gabapentin is saving the day.I wear 2.5 Butrans morphine patches,need to take Tramadol to help more with the pain without knocking me sen out,and the Gabadoodah means I can still function…Well after a fashion.
I know your situation will be different,but the G has always held me together, well before I became ‘A follower of the poppy’.Dunno if you have access to the stuff,but it is given out quite liberally for Neuropathetic pain.Maybe there will be something in this tripe for you or possibly somebody else.
Laters,
Wb x
Hi Wendels,
I’ve been on Amantadine now for about 2 years, at first, it was great, it really helped with fatigue and that lull in energy around mid-day. Long term, not so much, as with any medication, the body gets used to it and the magic it performed at first has worn off now and the fatigue is back with a vengence!
A beneficial combination I found was using the Amantadine along with Co-Qu 10. It’s available from Holland and Barrett and not too expensive either.
Hope things start to improve for you.
x
Can anyone help me,I have been suffering with HEAT I feel totally exhausted and sometimes have to spend the night sitting up with fan on me,through the day just lie on top of bed with fan and ice pack to cool me down.i get so depressed as I am not finding any answers.i need Help please.i need to say not everyday.thanks
Hi Dizzy,that is tough and I feel for you.What % is the humidity.Anything more than 30% in my flat and my fatigue becomes trully appaling.
Good luck,
Wb
Hi Jane
I tried Amantadine for about 7 weeks earlier this year when my fatigue was at its worst. It did seem to help within a few days of starting it and I felt a bit more alert during the day, my afternoon naps were lighter and shorter and I woke up feeling more refreshed. However after 3-4 weeks I began to feel a bit odd. I was still awake more but I didn’t feel quite so alert and there were a couple of occasions where I felt that my spatial awareness was compromised when driving. Normal driving was okay but I noticed it when I was parking. I just felt that I wasn’t so in control and I didn’t trust myself in tight spaces. Since I have to reverse park into a tight space behind my house between a neighbour’s car and a fence, it’s a little hard to avoid such situations. So I stopped taking them and haven’t had that odd feeling since so I don’t think it was a coincidence. I’m going to discuss Modafinil at my next neuro appointment.
Tracey
First time I tired Amantadine was 2003 after I was DX with MS and I was on it for a month and found it did nothing for me, so they took me off…
Then 1 years ago I was given Modafinil and I was put on the highest dose, however I was taken off it a few months ago as all the time I was on it I felt that it was doing nothing for me. My Neuro said that it is not going to work for me as fatigue you get from MS is not the same type of tired it is medicated for it also gave me alot of pain attacks as if you suffer from anxiety it will only make this alot worse, my neuro said if this is not working there is no point in taking it because of the heart problems it can course later on 
To be honest I think different things work for different people, alot of reports on how Gabipentin makes people tired along with other problems…
I am now going for good diet and some exercise that I can manage and it takes so much time getting into this but I am feeling better for it.
Still tired tho sleep 19 hours a day in total and it never gets any better but this may sound strange but I find when I feel better in myself I can manage more of the day.
I hope you find what works for you everyone is different x
*Panic not pain attacks…
Hi Jane,
Like many others, fatigue is one of my worst symptoms. I take Modafinil and find that it wakes my brain up so I do manage to do more, even though it dosn’t do much for my physical fatigue. I have to take it quite early in the day as it can stop me from getting off to sleep and I don’t take it when I have a bad day as there’s nothing worse (to me, anyway) than having an alert mind and a body that can do nowt about it.
Mags xx
I’ve been on modafinil for three years. It has honestly transformed my life, however I know I am lucky because it doesn’t work for everyone. The best thing about it is that I am not so tired, I hardly ever have to sleep during the day and my brain works more at normal speed. It does not help physical fatigue though - my muscles get tired just as quickly as before. It also does not work well enough to cope with relapse-level fatigue (when I’m a virtual zombie) - I don’t want to raise your expectations too high! I take 100mg in the morning about 10am and 100mg in the afternoon about 3pm. I tweak the timings (and occasionally the dose) depending on what I’m doing though. The side effects were quite short-lived for me. I occasionally felt a bit “surreal”/jittery at times and got the odd, mild headache, for the first couple of weeks but that’s about it. I have also tried amantadine in the past. It did seem to help a bit in the beginning, but then seemed to make things worse. I didn’t get any side effects with it. Other things that are supposed to help with fatigue are exercise and CBT. I can vouch for exercise, but I only know about CBT from research results. If you try modafinil, it’s worth playing around with the timings to find what suits you best. It’s not a cure, even for those of us it works for, but it can make a big difference. I hope you find something that helps. Karen x